PEG tube dementia/PSP - end of life


Any ex-caregiver whose patient had a PEG tube inserted before they passed away? How did the end occur? Was it painful?

Some background....

My dad has PSP and is in an advanced stage - he had a PEG tube inserted when he aspirated 4 months ago - the neuro stopped his carpidopa-levodopa (sinemet) since he had horrible leg spams - it led to a very bad state where he could not talk, eat, drink, sit up, communicate or even swallow his own saliva

Another neuro saw him again a month ago and said to resume the Sinement, in a different dosage and it's given great improvement - he can eat and drink again, though he has some difficulty and he can communicate a bit

The PEG tube is still there - having seen my dad suffer like that before, I want to remove it - so in case he progresses to the stage again where he cannot eat or drink at all, he shouldn't be force-fed and kept alive in a state where every few days he needs to get deep-throat-suctioned and he suffers distress and pain

My dad's neuro refuses to allow it, though I told him that in my dad's condition, all his vital signs are poor - he cannot read or walk or watch TV or have conversations or enjoy the things he used to love - NIH and FRCS both recommend against it, in case the patient is in advanced stage (I posted it here too) - BTW, if a person cannot eat or drink, the PEG doesn't prevent aspiration, neither does it prevent the natural collection of saliva/mucus and that sliding down a patient's throat, causing extreme distress and eventual choking... which is cleared in a very painful way... every few days... for many months or years....

I've read other people mention that their patient did not have a PEG tube - and how at a certain point a patient would indicate that they don't want to be fed anymore and they would pass away peacefully (not starve, since the body reportedly releases endorphins which minimizes the pain) - that or they aspirated or died from pneumonia...

I was wondering about other people's experiences - and I wanted to be prepared (this is extremely difficult) so that my dad's end is as little painful and distressful as possible

Thank you

11 Replies

  • Not the same, maybe, but my beloved and stoic aunt, having survived years after one bad stroke, had another, and was being artificially fed through a tube inserted while she was unconscious. When the tube accidentally came out a few days later, she was awake and denied permission for them to replace it. She was sent home and died peacefully five days later, surrounded by her family, as she wished. I would wish for such a death for myself.

    I hope your father's suffering eases, however that may be. Terrible to watch those we love live in pain and confusion and be unable to save them. Take care of yourself, too, Sammy. I know you are suffering, as well. Love and peace, Easterncedar

  • Before I discovered this forum I read all the posts on cure.psp its US equivalent. There were accounts on there of people with PSP passing away peacefully once they were no longer able to eat and drink and having refused a PEG. Indeed, this is the end we are hoping for. We are in Turkey and to date our neurologist hasn't mentioned PEG at all and we are hoping that will continue.

  • I have written before about PEG feeding,

    Our experiences were positive, my husband decided to have the PEG fitted before it was critical, the procedure was very straightforward : he was at the hospital for about four hours.

    It took all the stress out of eating, with the help of a good nutritionist he maintained his weight so the little mobility he had continued . This gave him independence. He was able to enjoy small amounts of food for treats.

    During the last five days of his life ,in hospital, the nursing staff were able to use to give water and pain relieving medication. I don't think that it delayed his death but made the last few months more "normal "

  • Hi when the time came we only gave diluted feed and then just water down the peg for about a week plus drops of water orally x

  • Hi - thanks for this - sorry for reminding you of this but could you give your own opinion about how you thought the end was near? Was there no response? Vegetative state? Coma?

  • It is invaluable for giving pain relief and other medication x

  • I hope you will not remove the PEG. It was almost certainly inserted under a local anesthetic, involving trauma. and given that your loved one survived and recovered without contracting C. Diff or other hospital acquired infection, it was a success. As others have already said, it is very helpful for the giving of medicines, and will ensure that the patient maintains a safe body weight. You are correct in saying it will not necessarily prevent aspiration, and it is quite possible that a chest infection will ultimately take him, but I hope you can help him to have some quality of life before then. He is still in there, he loves all the things, activities and people he ever loved...

    My mum never really recovered from the PEG op. She got C.Diff. We got out of hospital after 3 weeks. 2 weeks after that she got a chest infection which turned to pneumonia. I wish it had been different. I miss her.

  • Hi, this is a late reply but I thought I'd update that my dad's PEG tube is still there but it's only used for medication

    It varies from patient to patient but this is definitely not true for my dad "He is still in there, he loves all the things, activities and people he ever loved..." - he can only respond in yes or no, can't tell if he is hungry, can only express thirst, can't tell if he wants to go to the washroom - he loved browsing the internet and using his mobile phone for texting and reading the newspaper and driving the car or later just being driven around the neighborhood in his wheelchair so he could say hi to the neighbors - that's all gone and he doesn't even move out of his room and can hardly sit - so I would rather eat and drink naturally and let his body take the decision when it cannot let him eat and drink normally any more

  • I agree the same with my mum . Had no problem with it

  • I believe my wife, Roisin's experience matched that described by Kathryn and Elizalou. Her PEG relieved the suffering caused by hours spent vainly trying to eat normally. Roisin knew that she was going to die but, so long as she was in no pain, wanted to stay alive - until her last week when her infected lungs could no longer provide enough oxygen. Although by then she could not walk or communicate, etc, my understanding of these postings suggests that many PSP sufferers' experience is far worse. As everyone says, it is unwise to generalize.


  • Hi x no problem mum had been confined to bed for 3 months she developed a chest infection which cleared up but about 2 weeks later on the Thursday I noticed she had conjunctivitis the next day she had a very high temp and was very chesty and unwell we umd and ahhd about antibiotics in the end I decided to give them to make her more comfortable she was quite distressed with her breathing ! So I discussed with GP about syringe driver and she started midazolan and hyocine which settled her to an extent at this time I guess I knew the end was near :( however the following Friday at 7 pm she was so lovely and settled dad and I decided to go home we received a call at 06.00 to say she had passed away ten minutes earlier . I hope this helps xxx her breathing had been irregular for a week they call it Cheyne Stoke breathing rapid breaths then holding breath x please feel free to ask me anything x my thoughts are with you. Xx

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